Quarantine

Just over a week of quarantine and although there are tense moments most days...we are making the most of it and I'm so thankful these three have each other...we've played in the creeks and in the woods, rode bikes, done several art for kids hub drawings, built lots of legos, spent as much time as possible outside, and attempted some second rate 'homeschooling'. However you are doing this time is great! I think there are so many blessings in it and that can come from it. I love to see how God works and I'm so glad we can always trust His ways.

Two weeks ago, we were in Cincinnati & all this Covid stuff was just starting to spread...I had no clue this is where we would be now. The results from Carson's sleep study and our decision to wait to decannulate was SUCH a blessing in disguise!! Carson is safe with a trach and I feel so much more comfortable having the trach with coronavirus floating around. I would be scared to death, right now, if we had decided to take his trach out two weeks ago! So thankful that they are times when you see God's mighty ways work out in your life and how even disappointments sometimes work out in your favor. God is good ALL the time!

Just remind me of this the next time I get irritated things aren't happening in MY timing!

Praying for all of you too in this ever changing time!!

Yes, my soul, find rest in God; my hope comes from him.

Trust in him at all times, you people; pour out your hearts to him, for God is our refuge.

Psalm 62:5 & 8

We can't rush this.

Well, we are back home...Carson still has a trach.

I was reading my last post and had to kinda laugh...basically all of my prayers were answered (other than getting good (best case scenario) news). But then, why do I still feel so disappointed...

Carson did so well with the process of the sleep study...he seemed a little unsure with his trach out but he said he was okay and he was able to sleep enough that they got adequate data. They left the trach out the whole night.

The sleep center said they got good data. And Preston said Carson coughed some but not a whole lot. They did see some improvement. So....the only disappointment is that the improvement wasn't enough to say he can take his trach out and he doesn't need any additional support.

The improvements...he had less obstructive events (but still considered moderate sleep apnea) and he didn't desat with these events (his O2 levels did not drop much).
However, he still has moderate sleep apnea and that isn't good. The doctor gave us three options that he was okay with. 1. Go ahead and decannulate, knowing we'd need to get CPAP set up at a later date. 2. WAIT on decannulating and get CPAP set up at a later time but BEFORE going forward with taking his trach out. 3. Do nothing different...continue on with a trach. He said time or waiting could work in Carson's favor - that the area that is likely causing the obstruction MAY continue to open up as he grows but that you can't say that for sure either.

We decided to go with option 2...this was also the doctor's personal preference. We will attempt another sleep study with CPAP (at a later time) and see if that improves the results.
I guess alot of my disappointment comes from the point that I was hoping for big improvements on the sleep study because all surgical interventions have been done and we kept getting - what seemed to be - really good news from the most recent scopes. Because trading a trach for CPAP (something that he has to be hooked up to every night, that has to be taken with him anytime he'd go somewhere overnight, that is another machine that is giving him aid) just doesn't seem as big of a win. When we were in the NICU every time we got rid of a machine from the room (Nitrous, the ventilator, IV poles, etc) it was a little victory...so putting one back in his room just doesn't seem quite so happy. I'm not trying to sound like a Negative Nelly...its just not quite what I was hoping for. And on top of that, although I know many people use CPAP and that it is a GREAT thing...Carson hates having things on his face so I'm not sure how it will go, it may not be a good option for him....it's ANOTHER sleep study, another process. It's hard going on this emotional roller coaster.

With all that said..I'm thankful that there was some improvement...we know that he CAN sleep without his trach if something were to happen...thankful for doctors that are looking out for Carson...And thankful that Carson is able to roll with the punches. He seems totally fine coming home with a trach. He mentioned several times in his prayers that he was thankful that he did 'good on my sleep study.' <3 And he did...he slept without his trach and he did everything he was supposed to...sometimes it just isn't God's timing. And I need to accept that. I know God has big plans for Carson and they are good!

In other news...we had a great trip. Poppy got to come along for the first time and Carson and Kellen got to show him a lot of our favorite things!

Lunch in Paducah at the Skate park

Dumping 80 lbs of soda tabs from school

The wonderful craft room

Sleep study champs

The zoo

I read this in a devotional on the way home today..

"It's okay to have things. Just know that the real life - deep joy and true meaning - is found elsewhere. People. Relationships. Compassion. Community. Food. Faith. Doubt. Love. Laughter. Sweat. Struggle. Tears. Triumph. This is what it means to be alive." ~Gideon Heugh

...it hit me...we were alive this trip...I think I experienced everyone one of these THIS trip from the fun we had, to the people that were with me, to so many texting/calling/checking in on us, the prayers that went with us and covered us, the upsets, tears, smiles, laughs, etc....deep joy - true meaning...real life is a great thing to experience.

Again...thankful for each one of you and every single thought and prayer sent our way!

Sleep study...here we come!

The time is here...we will be leaving tomorrow (Monday) morning to head to Cincinnati. Carson will have the sleep study done on Tuesday night. My understanding is that they will take his trach out for the sleep study but will then put it back in, in the morning regardless of how he does during the sleep study (if they don't put it back in during the night). He basically has obstructive sleep apnea to some degree so this will hopefully tell them that it has improved but if not, they will also get information on what is needed (CPAP, etc).

My prayer is that no assistance is needed at night time but I am going as surrendered as possible. If the sleep study goes well then Carson will be admitted to the hospital Wednesday night and will undergo a two night decannulation (taking the trach out) trial. And again, depending on how that goes...the next steps will be determined. Best case scenario, Carson would come home without a trach.

I will do my best to update along the way. We get to stay at the Ronald McDonald House this time so the boys are pumped! Please be praying that Carson is able to stay calm and that sleeping with his trach out does not cause any anxiety. I'm also praying for good news but more than that, that we get accurate results. Also, he has miraculously been well through some awful sicknesses at school other than some allergy drainage. I'm hoping that the drainage doesn't cause a lot of coughing at night (again, just so we can get good information from the sleep study).

Thank you as always, for all the prayers! I'll have to post some pictures another time, but Carson & Kellen's school has been collecting soda tabs for them to take to the RMH. The collected 80 pounds and it has made the boys even MORE excited about going! It was such a sweet gesture of support from his friends, classmates, and teachers!

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.  Psalm 139:13-16